Friday, October 19, 2007

We have had requests for updates. Thanks to all of you for you kind thoughts and concerns for Kelly and all of us.

We met with oncology today and they are waiting until they see the pathology report after surgery to decide on the next chemotherapy for Kelly. They will meet with her neurosurgeon hopefully Tuesday or Wednesday to come up with her new plan for treatment after she recovers from surgery. We also did all of her preadmitting and presurgery labs today.

One thing that made Kelly feel better today was we found out that CHOC opened their new Pediatric Intensive Care Unit last weekend. It sounds so much nicer than the old one. Whenever Kelly has these brain surgeries, she spends the first couple days in Intensive Care. The old unit was beds with curtains between them - very noisy and not very private. There wasn't much room either. We called it her "slot." It is also not a fun place to try to sleep with the nurses station just outside the curtain. The new Intensive Care sounds like it has been tremendously improved. There are all individual rooms that are large, with a separate sleeping alcove for a parent. I might actually be able to sleep. I always stay with Kelly when she is in the hospital. She feels good knowing she will have such nice accommodations her first couple days. She used to be so anxious to get moved to the 5th floor, where the neurosurgery patients are.

Kevin is flying home tonight! He will arrive early in the morning and be here until Tuesday night. We are all glad he will be here for Kelly's surgery. It will be good to all be together, since our family hasn't been together since July.

I am taking my laptop to the hospital and if I can find a wireless connection, will give updates on Kelly. I know I can get one once she is out of Intensive Care, I'm not sure how it will go until then. It is also pretty hard to use my cell phone while she is Intensive Care. I have to go down to the lobby to use it. So we'll keep everyone updated the best we can.

We are so impressed with Kelly's positive attitude. She has taken this news so well and is always looking at the bright side of this. It is amazing how easily she can find positive aspects of her situation. She continues to be an inspiration to us.

7 comments:

Hi Kelly & Kathy,You're right, Kelly is an inspiration to all of us - and so are you! The new PICU sounds sooo much better! But deep down aren't you going to miss that slot!? Enjoy some family time all together!! Sending love & hugs to all of you...Tracy, Tom, Emily & Jake

So glad the new Pediatric ICU is there for you!! Sounds like a huge improvement from the last ICU you were in!! Hope you get to have some visits from those adorable dogs last time you stayed at "The CHOC Hotel!"

We're so glad all of you are together this weekend!! Like Aunt Tracy said, enjoy some family time!

Dear Kelly,Your Dad told me that you were able to get out on Thursday and Friday and do a couple of fun things for a change. I'm glad for you. Sometimes people can forget how good normal can be. Your Dad called from LAX Saturday so I know that he's with you now which is good for all of you. All my friends here are praying for you and one asked me today if they could send you something. I said that people were giving you I-tunes gift cards and Borders gift card and stuffed animals. Is there anything that you would want? Could you stand another stuffed moose or a book on CD? People tell me that sheer force of will is very powerful medicine. And it seems that you have that covered. All are love and all our prayers are coming out to you.Aunt Denise Nana and Poppie too.

I've never seen someone so intent and focused and positive. Kathy and Kevin you should be so very proud of your daughter and Kelly, we should all take a valuable lesson from your page book. You are an inspiration to all those around you.

Dear Warrior,I'll call you warrior because that is what Kelly means and that is what you have been doing. It's about 10:45AM here so you'll be at the hospital now for the surgery at 1:00 PM (our time). You're in my thoughts and prayers today as you and your sisters and your Mom and Dad are everyday but especially today.Love and hugs and kisses,Aunt Denise

Kelly's Story

Kelly was diagnosed with a grade 4 glioblastoma multiforme (brain tumor) in July, 2007. She had surgery to have the tumor removed at Children's Hospital of Orange County in Orange, California. After one round of radiation and chemotherapy, she had another surgery to remove a recurrent tumor on October 22. She is receiving further treatment to try to prevent another recurrence. This website is to keep friends and family updated on her journey and her progress. She loves to read comments posted here for her!

Treatment Plan8/07 - 9/07 30 days radiation along with 42 days of oral temodar. Her first post radiation MRI showed recurrence of her tumor, so this treatment was changed.

11/16 Gamma Knife Radiosurgery - attempt to create a "boundary" to contain cancer cells to the one area of her brain

11/07 to present Irinotecan (also known as CPT-11) and Avastin given every other week

Leave a message for Kelly...

A big thank you to everyone who has posted messages to the blog. Kelly checks them everyday and it means so much to her to hear from all of you and know you are thinking of her. It really makes her happy to know so many people are cheering her on.

If you'd like to post a message and aren't sure how, go down to the bottom of the post that you would like to add a comment to and click on comments. If someone has already posted a comment, you will also see a number telling how many people have commented. Then login or create a new account, which is easy. You just need a name and password. If you post under "anonymous" please remember to sign your name so we know who it is from.

If you click on anonymous, you don't have to have an identity or password, so that may be easier!